Eclipsed identities and unheard voices: a qualitative inquiry into the lived struggles and support expectations of caregivers of persons diagnosed with schizophrenia in India

Background Family involvement in caregiving for persons diagnosed with mental illness is a universal phenomenon. However, cultural norms and social structures shape caregiving roles and coping patterns differently. In India, strong kinship ties, and the perception of caregiving as a family responsibility, often lead caregivers to assume extensive roles that can be emotionally and physically demanding.Methods This study explored the experiences, perceived challenges, and coping mechanisms of family caregivers of persons diagnosed with schizophrenia in India, along with their expectations of an intervention to support them in the caregiving journey. In-depth semi-structured interviews were conducted, and the data were content analyzed under two broad categories: (a) lived experiences and challenges of caregiving, and (b) caregivers’ expectations of an intervention that supports them in the caregiving journey.Results Caregivers described caregiving as an all-encompassing role, often compromising their autonomy. Many expressed anxieties about the future, especially concerns about who would care for their relative after their death. They emphasized the need for an individualized therapeutic approach that offers emotional support, and a space for self-expression.Discussion Caregivers’ perspectives highlight caregiving contexts shaped by cultural factors. They strongly advocate for a comprehensive, individualized intervention grounded in their lived realities.